Disability Quietus

How I Euthanased My Disability and Lived

Robert Farley's play presented on the second day of The First Life Activities International Conference on Disability, Creative Community - Initiatives for People with Disability, held in Newcastle 21-24 September 2003.

Robert is introduced by the Chairman. Disability interrupts and says,

Disability: “Thank you, Richard, but I can tell you more about Robert. Ladies and Gentleman let me introduce to you Robert Farley. Know him well, knownn him for years, man and boy.”

Robert makes his way to the stage. Disability offers a flourish of welcome.

Disability: Presenting Robert Farley….(Grand Flourish)
Robert: Ladies and Gentlemen thank you and good morning. I want to talk about today aspects of disability that are obviously from my personal perspective. Representing a set of personal views. I want to take you on a journey of self discovery a search for and realisation of my identity as a person with a disability.. I should also introduce you to my disability. I acquired him when I was a child.

Disability:  And been a faithful, ever present servant.
Robert: Or a tyrant, or a mill stone or a wet blanket.

Disability: Come on, now. You did not always think like that. In the beginning we were a team. I was an emphatic presence.  All you had to do was lay there not moving. I arranged everything for you.
Robert: You were disability that was served.

Disability: And it was a great partnership. You the helpless child and me making sure your needs were attended to. We were a happy.
Robert: I wasn’t happy. I was bewildered. Frightened.

 Disability: You seemed to enjoy life all right as a child. Being wheeled about the place. Having shopkeepers run up to you and give you surprises. Being placed in the front row at sporting events. Little old ladies patting you on the head and dropping coins into your hand. Never having to stand up for the national anthem. Quite the little Emperor, being waited upon. You were like a French Poodle sitting on a satin cushion.
Robert: We know they were doing these things because of you. Not me. I wasn’t special. Having you just made me different. In fact you made me invisible. People saw you before they saw me. I mean talk about an identity crisis. Having you around like a clone, like a Siamese twin every minute of the day and night.

Disability: Cosy, eh?
Robert: I woke up in the morning and turned over to see if disability was awake yet. I felt good today. Oh! How did disability feel? Absolutely claustrophobic. It was like you were an entity. Not a companion but an intrusion.

Disability: You seemed okay when we were on our own. It is only as time went on, and in front of others you changed. Wanted to be yourself.
Robert: But of course life wasn’t as tension filled or difficult for me as my words might suggest.

Disability: Generous of you.
Robert: How did I know how you fitted into my life? I mean, as a child how did I know about things like identity and expectations or opportunities or options.  Especially when I didn’t have much of any of those things. I was just a thin reed bending to the winds of circumstance (melodramatically) And I don’t want to be particularly hurtful to you, but you were not an entity that presented me with opportunity in a positive way. You were not a role model. Something I could look to with pride or for enlightenment. Disability is inadequate. Confined. Left out of life. You represented barriers to me.

Disability: Don’t only blame me. Stairs were barriers too. And inadequate transport and support services.  And don’t you think you were complicit in the deal, as well? You played your part too? The willing partner in impotence and powerlessness. For a long time you didn’t try to break out. Stretch your wings and fly. You were satisfied being confined and caged. Your satin cushion might have been a comfortable resting place.
Robert: Rubbish! I didn’t know any better.
Robert addresses the audience.
See? This is one of the issues with disability. It can complicate otherwise simple straight forward events. It can be very obvious and loud. I mean, I simply wanted to come along here today and have a chat with you but in this hive of disability activity in Club Nova he is in his element. Loud pushy and performing. There are so many people around to take notice of him and faun over him.

Disability: You sound jealous, old chap. They love me! I’m a star!
Robert: No. You’re an object for study or discussion. The most relevant presence you have is in your impact on peoples’ lives. Your impact on families and the community.

Disability: You make me sound so without a soul. So empty. You wound me, Sire! Do I not have feelings? What about when I wake in the morning and I have to decide whether I’ll be strong, brave, courageous, pitiful, bitter and long suffering or stoic and an inspiration for everyone. You try being an inspiration for more than two hours in a row. It’s exhausting!
Robert: I agree. This is one of the points I want to make. Disability is expected to present in a limited, stereotype kind of way. And it mightn’t matter to me if it does. Except for the fact you want to march along a few paces in front of me announcing my arrival. People ascribe to me a set of circumstances and expectations based entirely on your existence. Even the charming and erudite people here are taking as much notice of you as they are of me.

Disability: I can’t help having an irresistible personality. Thank God for community attitude, that’s all I can say. At least I can fulfil their expectations.  At least I know my place.
Robert: At the back of the queue and the bottom of the pile?

Disability: You blame me for all the negative and bad stuff in your life. It’s not my fault.
Robert: I’m not blaming you for anything. It is all about me. How I permit you to impact on me. If I define myself by you. Or let others define me by you. If I let my personal circumstances and expectations only be a reaction to you, then it is my fault. If my disability becomes the overwhelming influence in my life then I cease to be a complete person. You have become me instead of an aspect of my existence.

Disability: But you have been doing your own thing for years. More or less. I’ve been in limbo. You are the drum majorette in your own parade, baby!
Robert: I’ve forgotten how tacky you can be. Of course you don’t have the same relevance anymore. Not for years. Calling you up here today is what is referred to as a theatrical device. You merely help me illustrate a story.

Disability: A theatrical device!! That’s what I am? Do you realise how many of the ten Standards you’ve breached? My god!!  Where are you, Robert Fitzgerald?
Robert: You didn’t figure in things when I wrote stories. When I won my first literary award it was me the writer not the disabled writer the judges read. When I designed and manufactured furniture it was purchased as the work of a craftsman, not a disabled craftsman.  It was the work of me the person, not the disability.

Disability: So you did stretch your wings a little.
Robert: It was a strange process trying to exercise abilities. Even knowing if I did have abilities. Especially when very basic things like not being able to reach a light switch or turn on a tap were very clear reminders of lack of ability. I didn’t have a roadmap of possibilities. I had to make my own discoveries.

Disability: You had to understand that people might have different abilities.
Robert: Not even have abilities but simply a need to try things. Stretch my horizons and explore.  Acquire, conjure up, a mind set that it was necessary to keep pushing back the horizon and not always expecting or accepting limits. Particularly if the limits were self imposed by fear or uncertainty. Or ignorance. It was a matter of being daring enough to break out of the marshmallow prison of the status quo. The comfort zone. Even if the comfort zone had more to do with familiarity  than comfort.

Disability: And you finally accepted that Disabled or not, we all have support needs of some kind. Whatever our activities in life. We all need some form of support or other. Doctors, Shop Assistants, Electricians or, maybe, someone to feed us.
Robert: I had to think of support systems as being enabling and not as a reminder of inadequacy. Even if they were smothering, patronising or clumsy. Even the support that didn’t quite work was useful. Even if it didn’t take me to the promised land it led me to the doorway and motivated, gave me a reason, to find my way in.

Disability: It’s nice to have a civil conversation with you. Without antagonism.
Robert: I’m not antagonistic towards you.

Disability: You challenge me. You deny me.
Robert: I don’t deny you. I accept you as that aspect of my existence but not as a definition of my life or its expression. If anything, I transcend you.

Disability: (Sarcastically) So good for you. You are the big victorious one. Bully for you.
Robert: I don’t measure achievement against anything but effort. Surviving is sometimes victory enough.  Resilience in the face of negative odds. I don’t consider myself victorious at all. I choose to try and live my life. On my own terms, if I can.

Disability: How can you live on your own terms when you might need the support of others?
Robert: It is a difficulty to enter into the provider receiver relationship where someone else has power over very basic needs in our lives. I am not always comfortable but I must accept what is most important to me. That I need to live. And I can, as far as possible, be the driver and facilitator of my own support network and not a passive receiver object.

 Disability: A warm and fuzzy concept but what about other people with a disability who don’t have the skills or opportunity to be the driver?
Robert: Well, then it’s up to their support services to remember the name of the game. Support and not control. Enablement not ownership. And I know some groups whose members are active participants and decision makers in the service.  I know services who treat their clients as valued individuals.

Disability: As I said, warm and fuzzy. You got angry when you had to wait for a fortnight because your O.T. had to attend meetings and not your needs.
Robert: That’s because I became a little precious and forgot my situation was no different from a household being without hot water and waiting for a plumber.

Disability: God!! So boring. So preachy. What about me, then?
Robert: What about you?

Disability: How do you think I feel? I was so excited waiting to see who I would be given to as a disability. I looked forward to performing my duties. Limping, falling over when necessary. Being piteous and brave and using all my dramatic repertoire and star qualities. And I had to end up with you. Someone who wanted to be themself. Oh yes, I had my little triumphs but mostly years of being neglected, left out in the cold. I feel cheated. So many wasted years when I know I could have been a great disability and not just a hack. There are disabilities who have it so good. They are cuddled and protected. They always march in front.
Robert: You can always go and live in Disability World.

Disability: What’s that?
 Robert: A special world built just for you.

Disability: I’m no use around here. You don’t seem to want me.
Robert: You get to be looked after. You get to do lots of things. You might not have to think for yourself, there is always someone to organise you.

Disability: Is that good?
Robert: I’ll tell you some tips so you can get by. First the occupational hazards of disability. You might get R.S.I from tenpin bowling, you might get sore eyes from sitting in the front row of the movies, you might get premature male balding from being patted on the head. That doesn’t really matter except if you’re a girl. You’ll probably end up with a gambling addiction from hanging round clubs. But you’ll have fun. As long as you learn to be patient. And learn to fit in.

Disability: Are you sure? It sounds scary.
Robert: It’s not at all dangerous. Your going is a symbolic exclusion that declares my independence.

Disability: A symbolic exclusion. What about respect for my dignity?
Robert: It’s about respect for my individuality.

Disability: Will I fit in?
Robert: You only have to learn the rules. While it’s a world built for you, you don’t own it nor do you control it. The world is like a machine. All you have to do is climb on and sit down.  Other people push the buttons and talk amongst themselves. You just ride.

Disability: I thought it was my world? What if I want to play with the buttons?
Robert: Well, you will be a clever and bright young man but it is not always possible to do everything we want when we want. It is more possible to do what others say. You see disability world is a very complex place with lots of competing needs from many interest groups and stakeholders.

 Disability: But I’ll still count?
 Robert: Well, you’ll be counted. You’ll be case, a number or a statistic, or if you are very lucky, an unmet need!

Disability: I hope I’m an unmet need. But I’ve got so much to give as a disability. I might find someone who wants me.
He looks round the audience and smiles tentatively, beseechingly.
 Do you want a disability? 
He moves to the audience and approaches a person.
Do you want a disability? I’ve hardly been used.
He approaches another and sits on a knee.
I’m a wonderful disability. Do you want me?
He doesn’t give the audience a chance to respond. He keeps moving. Only to able bodied people.
Robert: (holds up a small case) Disability, I’ve got something for you. Come and have a look.

Disability: (eagerly) What is it?
Robert: Open it and have a look.

Disability: What’s this? (He pulls out some net)
Robert: That is your a safety net. This means you cannot fail. If you are angry or behave badly it’s because you are disability. I you don’t try. It’s because you are disability. People make allowances for you.
Disability stuffs the net back in and holds up a package. 
It’s a package for you. I got you a package This is your passport to disability world. This buys you things.
Disability places it back in the case.
Disability looks wide eyed and excited. Turning to the audience he holds the case against his chest proudly and boasts...

Disability: I’ve got a package. I’m going shopping. I can buy whatever I like.
Robert: No you can’t buy whatever you like. It just means you can be provided for. It’s time you left, now. Disability slowly rises. He clutches his case like a security blanket. He suddenly looks vulnerable. His shoulders droop. His head lowers. His smile becomes beseeching and uncertain.

Disability: I have to go now? It was nice being with you.
He reaches out and touches my shoulder. There is an air of pathos about him.
Robert: You are not with me. You are part of me. But it’s time you receded. You left. You live in your world and I’ll live in mine.
Disability drags off sadly without the case.

Robert: (Nodding towards the case)  You’re forgetting something.
Disability returns, takes the case, looks happier and walks off
As he disappears behind the curtain he turns to the audience and waives happily and mouths, “Bye”
Robert: Be happy.
Sounds of Strangers in Paradise. Borodin’s Polotsvian Dances.

Robert: And so he departed.

Robert: And now I do live in my world. It is a world of possibilities and optimism. It is a world where aspirations and dreams can become realities. I am open to receive all gifts. I am untrammelled by feelings of compromise or modesty. (smiles)  In a search for life’s expression I am not distracted by feelings of guilt,  missed opportunity or an agenda prescribed by my or others’ expectations. I assume my right to indulge in the pursuit of hedonism. I embrace life as a member of a complex and diverse community and I am exhilarated by a sense of freedom.

I take a glass of champagne and sip.

© Copyright Robert Farley 2003